When Stephanie Walker, 62, was diagnosed with metastatic breast cancer in summer 2015, she didn’t know anything about the disease. She was given some information about the chemotherapy she’d be receiving — something she was “thankful for” — but no one gave her any support for the emotional or financial aspects of managing breast cancer.
“I had to find all that stuff out on my own,” says Stephanie, who is a wife, mom, and grandma from eastern North Carolina.
Trouble reared its ugly head again in 2017, when she had a pulmonary embolism and her doctors told her she needed to stop working. “[Suddenly] you don’t have a job … and bam! Your insurance goes away, too,” says Stephanie. “And I still had metastatic breast cancer.”
She decided to channel her prodigious natural energy and industriousness into researching solutions online — something she worked on “eight hours a day, five days a week, for three weeks,” Stephanie recalls. She sent emails and made phone calls to find financial assistance. And she went to her cancer center and candidly laid out her situation, explaining that she didn’t have a job. She told them, “I want to live, so what can you do to help?”
Her hard work and self-advocacy eventually paid off. She was able to find ways to reduce the monthly treatment cost of approximately $16,000 to something much more affordable. “If I had not advocated for myself, we probably would have lost our house, and I would have been more destitute than I was,” says Stephanie.
Advocating for Others With Metastatic Breast Cancer
Stephanie’s experience of managing metastatic breast cancer as a Black woman from a “rural, predominantly African American and medically underserved” region of the country gave her a new awareness of the particular obstacles and disadvantages faced by women of color with this disease.
“When I attended my first metastatic breast cancer conference, I saw more Black women with metastatic breast cancer than I ever could have imagined existed,” she says. “I had a community now that I could go to with my problems or my concerns, and that is where I learned that Black women with metastatic breast cancer aren’t afforded the things that white women have access to.”
With this knowledge, Stephanie, true to form, sprang into action. She took on a role for an organization that helps get Black men and women involved in clinical trials.
“Clinical trials are extremely important to metastatic breast cancer patients. That is something I didn’t even know about when I was diagnosed,” she says. “Clinical trials today involve new medications that will hopefully extend our life, the quality of our life — or even cure metastatic breast cancer.” But, she notes, “Black representation for clinical trials is low.”(Participation of Black Americans in cancer clinical trials is less than 5 percent, with some estimates putting that number even lower, at around 3 percent, according to research published in October 2021 in the journal ecancermedicalscience.)
One unsurprising reason for this reluctance is a history of heinous acts, such as the Tuskegee experiment. “The Black community on a whole has a history of distrust of the medical community,” says Stephanie. But, she says, when someone like her approaches a patient who may benefit from a clinical trial, they may be more likely to consider participating. “I look like them. I’m more apt to get their attention.”
That’s what led her to take on her role as project lead, which entails communicating not only with the Black community but also with scientists. “I reach out to researchers, because I want them to put a face with the work that they are doing,” says Stephanie. “Research is going to keep people alive.”
This interview took place in February 2021.
Resources for Black Americans With Breast Cancer
Black women who have been diagnosed with breast cancer face specific challenges. Here are some organizations that can provide essential information and support:
African American Breast Cancer Alliance This group works to address the high mortality rates of Black women with breast cancer by raising awareness about the disease in Black communities, providing resources, support, and more.
For the Breast of Us Created by two breast cancer survivors, this site’s mission is to empower women of color who struggle to find breast cancer resources and communities.
Touch, the Black Breast Cancer Alliance This organization provides a community for Black women battling breast cancer, offering support and encouraging collaboration between patients, advocates, healthcare professionals, scientists, and others. The goal is to work toward eradicating breast cancer in Black women.